New Palliative Care Guidelines Demand 'Seismic Shift' in Care

Roxanne Nelson, BSN, RN

November 05, 2018

The latest edition of the National Consensus Project's (NCP's) Clinical Practice Guidelines for Quality Palliative Care has just been released. The guidelines emphasize the importance of interdisciplinary care and care coordination as patients move across care settings.

More specifically, they call for a "seismic shift" in the way palliative care is delivered by urging all healthcare professionals and organizations to integrate such care into the services they provide to individuals with serious illnesses.

"The guidelines were initially created to define the field of palliative care, and in many ways to define the specialty practice," said Betty Ferrell, RN, PhD, co-chair of the NCP Steering Committee. "So our initial efforts were focused on defining the domain," she explained in an interview.

That worked very well during the past 15-plus years. The guidelines clarified that palliative care means whole-person care for patients and families and that it encompasses and treats physical, psychological, social, and spiritual needs.

Palliative care is very much patient centered; it is something that patients and their families want and that the health system desperately needs, Ferrell continued. There is now a very high demand for palliative care.

"This fourth edition we think of as a very big step forward," Ferrell told Medscape Medical News.

"The key difference in this edition of the guidelines is the emphasis that palliative is not just restricted to specialists," she said. "All clinicians who care for seriously ill people need to practice palliative care.

All clinicians who care for seriously ill people need to practice palliative care. Dr Betty Ferrell

"So in this edition, in every domain, we address what every pediatrician, oncologist, cardiologist, nurse practitioner, physician's assistant, social worker, and so on needs to do to integrate palliative care into their practice," she continued. "This is really important in order to move the field ahead."

The guidelines were first published in 2004. This latest edition discusses continuity, consistency, and quality of care across the following eight domains:

  1. Structure and process of care

  2. Physical aspects of care

  3. Psychological and psychiatric aspects of care

  4. Social aspects of care

  5. Spiritual, religious, and existential aspects of care

  6. Cultural aspects of care

  7. Care of the patient nearing the end of life

  8. Ethical and legal aspects of care

Each of these domains has its own set of guidelines and criteria with clinical and operational implications, Ferrell explained.

Care Across the Continuum

The new edition expands upon its predecessor, specifically focusing on two key concepts:

  • Palliative care is inclusive of all individuals with serious illnesses, regardless of the setting, diagnosis, prognosis, or age. Throughout this edition, language has been added that is specific to the care of neonates, children, and adolescents.

  • Timely consideration of palliative care is the responsibility of all clinicians who care for seriously ill patients, including primary care practices, specialist care practices, hospitalists, nursing home staff, and palliative care specialist teams, such as hospice, hospital and community-based palliative care teams.

Sarah Friebert, MD, director of pediatric palliative care at Akron's Children's Hospital, Ohio, who is a representative of the National Pediatric Hospice and Palliative Care Collaborative, explained that although all age groups have been represented since the guidelines began, a big change in this edition has been a focus on care across the continuum.

"We previously had pediatric input and pediatric examples and language, but it was seen as another special group to be considered when putting together guidelines," she said. "The difference here is that we're talking about palliative care being the standard in populations across the continuum of health.

"So regardless of where you are physically, geographically, and regardless of where you are on the trajectory of your care — from prenatal all the way to end of the life in the elderly — it needs to be integrated into care," she said.

"This is opposed to being considered just another subspecialty or needing another speciality provider," she noted.

"What is exciting from the pediatric standpoint, coverage of the entire continuum of care puts it in the hands of anyone who is interfacing with anyone who is dealing with a serious illness regardless of age," said Friebert.

Other Changes

Another change is the addition of several key themes to each domain:

  • The elements of a comprehensive assessment are described.

  • Family caregiver assessment, support, and education are referenced.

  • The importance of coordinating care is emphasized, especially during care transitions.

  • Culturally inclusive care is discussed in all of the domains and has been expanded in the Cultural Aspects of Care domain.

  • Communication within the palliative care team, with patients and families, and with other providers, is a prerequisite for the delivery of quality care.

Other changes that were made in this edition include an emphasis on community-based resources and community-based providers, both with regard to anticipating and giving attention to the bereavement period. Also emphasized is continuity of palliative care regardless of whether the patient is being followed by a specialist palliative care team.

To develop the fourth edition of the guidelines, the National Coalition for Hospice and Palliative Care contracted with the Evidence-based Practice Center, at the RAND Corporation, to conduct a systematic review of the available evidence in palliative care. The systematic review was guided by key questions that addressed the eight specific domains in the guideline.

The guidelines have been endorsed by more than 80 medical organizations, including the American Board of Medicine, the American Cancer Society, the American Heart Association/American Stroke Association, and the American Geriatrics Society, according to the National Consensus Project for Quality Palliative Care.

The guidelines were funded by a grant from the Gordon and Betty Moore Foundation to support a Stakeholder Summit. Additional support for the systematic review of the research evidence was provided by the Gordon and Betty Moore Foundation, the Gary and Mary West Foundation, the John A. Hartford Foundation, and the Stupski Foundation.

National Coalition for Hospice and Palliative Care. Clinical Practice Guidelines for Quality Palliative Care, 4th Edition. Full text

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